Why the UK Needs a National Register for Fatal Allergic Reactions

Every death from an allergic reaction is a tragedy. But without proper data, we can't learn from these losses or prevent future ones. A mandatory national registry would change that.

The Problem Today

We don't have reliable data on how many people die from allergies each year in the UK, or under what circumstances. This isn't because these deaths don't happen—it's because our current system doesn't capture them properly.

Because of incomplete reporting, inconsistent coding, and the lack of a centralised system, many fatal reactions—or near-fatal ones—never get aggregated or analysed. When a death is recorded as "cardiac arrest" or "asthma" without mentioning the underlying allergic reaction, we lose critical information.

This lack of data undermines prevention efforts. Regulators, food businesses, and public health authorities can't spot patterns or target interventions effectively. We're flying blind, and that costs lives.

What We Do Have—But Why It's Not Enough

The UK Fatal Anaphylaxis Registry (UKFAR) has collected data on fatal anaphylactic deaths since 1992. This voluntary registry, managed by the British Society for Allergy and Clinical Immunology (BSACI), has provided valuable insights into patterns and risk factors.

However, reporting to UKFAR is voluntary, not mandatory. This means many deaths go unreported. Coroners, hospitals, and families may not know about the registry, or may choose not to participate. The result is incomplete data that doesn't reflect the true scale of the problem.

Leading allergy charities, coroners, and public health experts have repeatedly called for a more robust, statutory national register—one that ensures every death (and near-fatal incident) is recorded. This isn't a new idea, but it's one that needs urgent action.

Why a National Register Matters

Better Prevention Through Data

A comprehensive register would enable proper analysis of how, when, and where fatal (or near-fatal) reactions occur. This helps identify risk patterns: which allergens are most dangerous, what types of food businesses or contexts pose the highest risk, and which demographic factors matter most.

Systemic Improvements

With robust data, regulators, policymakers, and food businesses can understand systemic failures—mis-labelling, cross-contamination, unclear menus, inadequate training—and enforce or improve safety rules accordingly. Data drives accountability.

Transparency and Accountability

Families, advocates, and the public deserve to see how often these tragedies occur. Not just through news stories, but through transparent, accessible data. This transparency helps drive public awareness and policy change.

Supporting Research

Epidemiologists and allergists need robust data to improve guidelines, prevention strategies, public awareness campaigns, and medical treatment protocols. Without comprehensive data, research is limited.

Expanding to Serious Reactions

A national register could also capture serious allergic reactions (not just fatalities), improving overall safety across restaurants, manufacturers, schools, and other settings. Near-misses are learning opportunities that shouldn't be wasted.

Obstacles and What Needs to Change

Mandatory Reporting

Reporting must be mandatory, not optional. All relevant deaths (and serious reactions) need to be captured. This requires legal changes to ensure coroners, hospitals, and other relevant bodies are required to report.

Standardised Coding

We need standardised coding and classification to ensure cause of death mentions "anaphylaxis" or "allergic reaction" appropriately, not buried under vague terms like "asthma" or "cardiac arrest." Medical coding must reflect the true cause.

Data Protection and Privacy

Balancing public interest with respect for privacy is crucial, especially for minors and grieving families. The registry must be designed with privacy by default, while still providing useful aggregated data for public health purposes.

Sustained Funding and Support

A registry needs sustained funding, staffing, and oversight—not just occasional grants. This requires commitment from government and public health bodies to treat it as essential infrastructure, not an optional project.

Coordination Across Systems

Effective coordination is needed across coroners, hospitals, public health authorities, food regulators, and researchers. This requires clear protocols, training, and communication channels.

What's Already Being Done—And Where There's Momentum

Beyond UKFAR, newer efforts like the UK Anaphylaxis Registry are working to capture allergic reactions more broadly, not just deaths. These initiatives show that the allergy community recognises the need for better data.

In 2025, experts and campaigners have renewed calls for reforms: mandatory inquests for all anaphylaxis deaths, a statutory national death database, and better reporting of near-misses and serious reactions. The momentum is building.

With increasing food allergies in the UK and rising hospital admissions (even if fatalities remain relatively rare), now is the time for action. The infrastructure exists—we just need the political will and legal framework to make it mandatory.

What You—And This Site—Can Contribute

As someone with serious allergies (nuts, sesame, lupin) and a platform that reaches an allergy-aware audience, I believe we have a responsibility to raise awareness of this issue. A national database isn't just bureaucracy—it can save lives.

This page exists to:

Raise awareness of the need for a mandatory national registry
Provide resources and links to organisations pushing for change (charities, regulators, researchers)
Encourage community action: petitions, support, advocacy
Advocate for policy change through public discussion and engagement with MPs

If you're reading this and you have allergies yourself, or you've lost a loved one to an allergic reaction, your voice matters. Share your story (anonymously if you prefer), support the organisations working on this, and help push for change.

Take Action

For Visitors

Write to your MP about the need for a mandatory national allergy death registry
Support allergy charities working on this issue (Anaphylaxis Campaign, Allergy UK, BSACI)
Share this page and raise awareness in your networks
If you've experienced a serious reaction, consider reporting it to UKFAR or the UK Anaphylaxis Registry

For Policymakers and Regulators

Establish legally mandated reporting for all anaphylaxis deaths
Create a statutory national database with proper funding and oversight
Improve medical coding to ensure allergic reactions are properly recorded
Extend reporting requirements to include serious non-fatal reactions

For Food Businesses

Voluntarily support transparent reporting of serious allergic incidents
Invest in proper labelling, training, and cross-contamination prevention
Proactively report serious incidents to relevant authorities
Work with allergy organisations to improve safety standards

Resources and Further Reading

UK Fatal Anaphylaxis Registry (UKFAR): Information about the existing voluntary registry
British Society for Allergy and Clinical Immunology (BSACI): Professional body supporting allergy research and advocacy
Anaphylaxis Campaign: UK charity providing support and advocacy for people with severe allergies
Allergy UK: National charity providing information and support for people with allergies
Food Standards Agency: UK regulator responsible for food safety and allergen labelling

Note: This page will be updated with specific links and resources as they become available. If you know of relevant resources or organisations working on this issue, please get in touch.

Important Notes

Data limitations: Any existing registry is only as good as the reports it receives. Absence of data doesn't mean absence of incidents—it may simply mean underreporting.

Medical disclaimer: This page advocates for policy change, not medical advice. For specific medical questions about allergies, consult your GP or allergist.